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May 20 2023
Autism and ADHD diagnosis and the problem with cultural competency among diagnostic professionals

It’s no secret that diagnosis in the UK (and, in fact, the world at large) is increasingly difficult to access. I have written at length about diagnosis, such as this article on why getting a diagnosis is so difficult, and this piece considering the issues with current diagnostic criteria. Whichever way you look at the current situation, it’s pretty dire.

Currently, there are around 700,000 Autistic people with 122,000 people with am open referral for diagnosis between July 2021 and June 2022. In terms of ADHD, it is estimated that a total of 2.6 million people meet the diagnostic criteria. Autistic children are waiting up to five years for an appointment, with many adults having to go down the private route to obtain a diagnosis. The situation is not any better in terms of ADHD with people waiting (again) up to five years for assessment.

The problem, however, is more complicated than just waiting times. Assuming you can get a referral in the first place, many professionals have very rigid and stereotypical views on how autism and ADHD present in individuals. At this point, I feel it necessary to mention the long-held and deeply inaccurate belief that these diagnoses belong to little boys. This is a view that has been perpetuated by biased research and misinformed media offerings.

This culminates in a culture within which Autistic and ADHD individuals are misdiagnosed or rejected from the diagnostic process for not fitting the diagnostic criteria written in the DSM and interpreted by the diagnostician.

What we are talking about here is a lack of cultural competency. Specifically, we are talking about the concept of neurodivergence competency as conceptualised by Tanya Adkin and written about by the both of us. As you will see from the above linked article, it is not enough to be “neurodiversity affirming”, one needs to have the foundational knowledge and nuanced perspective provided by engagement with the community in question.

This is what is missing. Professionals who diagnose autism and ADHD rarely have cultural experience. In my opinion, if your job is to identify neurodivergence, you should be active in the communities to whom that identity applies. It is not enough to have studied medicine and read some relevant sections of a textbook. To understand what autism and ADHD look like in day-to-day life, professionals need to understand our culture.

This allows a person to see how ideas such as monotropism and the double empathy problem practically apply to neurodivergent lives. It allows them to have a practical understanding of how we mask and camouflage our neurodivergence. It presents the opportunity to engage with the power structures that oppress us and understand the numerous ways we are traumatised and how that might present.

It seems non-sensical that after years of waiting for a formal diagnosis, a person might be turned away on a technicality. When a lack of cultural competency stands between a person and a validation of their identity, something is fundamentally broken. People deserve access to and validation of who they are. Gatekeeping it behind services that are oversubscribed, underfunded, and that have no post-diagnostic support to offer is perhaps one of the most unethical things that a branch of medicine can do.

In truth, requiring a diagnosis fundamentally undermines the neurodiversity movement, but the current world is yet to move beyond such diagnostic models. Until such time that diagnostic professionals engage with the communities they exist to serve, there will be a significant power imbalance, and Autistic and ADHD people will be the ones paying with their lives and wellbeing.

David Gray-Hammond 0 Comments
Mar 25 2023
Autistics Incarcerated: The dark underbelly of the NHS

This evening, I took it upon myself to watch Channel 4’s documentary on the abuse of Autistic people in psychiatric institutions. As I sit here reflecting on the way the Autistic participants were treated by those meant to care for them, I will confess that I have shed some tears of my own.

I am one of the Autistic people unlucky enough to spend time in carcerative care.

I have witnessed restraint used as punishment. I have been sedated so heavily that it caused me to develop an irregular heartbeat. To this day, I do not publicly name the psych ward where this happened for fear of retribution. Such is the nature of the power imbalance between Autistic people and the mental health system.

The idea that an institution that is legally considered to be “a place of safety” can be so traumatic seems almost absurd. Yet, there are innumerable Autistic people locked away in these places, experiencing things that no human should. Things do not improve upon release; section 117 aftercare so often goes by the wayside.

Autistic people are treated, at best, as a nuisance in the staffs workplace. Staff so rarely seem to consider that they work in a place we are forced to live. The privilege is theirs, not ours. To assume that we should be grateful for being detained indeterminately is to fundamentally dehumanised us. Autistic people deserve softness and caring, not a lesson in how much the mind can handle before your inevitable demise.

This is an issue that the NHS fails to address year on year. I believe it’s because Autistic people are framed as burdensome and irritating in a system that our government has ensured is on its knees.

Now is the time to speak out. I would ask that if you care to share your own experiences, you do so by using the hashtag #AutisticsIncarcerated.

I choose those words because that is the nature of inpatient treatment. It is not a hospital environment. Each and every one of us deserves to know that we have a place to turn at our darkest moments. We shouldn’t have to fear seeking help.

David Gray-Hammond 8 Comments
Feb 17 2023
Power dynamics and mental health: Neurofuturist discourse of mental health

When we consider power dynamics, we often consider our external environment and how power flows through the various parts of society, and where privilege is afforded by that power. While discussion of intersectionality and power dynamics is important when considering where discourse comes from and how it affects groups of people, we often don’t think about how such discourse injures our relationship with the Self.

Mental health has long been the remit of medicine. Distressing or unusual behaviour has been positioned as a pathology requiring treatment for decades, despite this approach not improving outcomes for those it affects in that entire time. We use a lot of troubling language when talking about psychological distress; disorder, condition, ailment, mental illness, psychopathology. Each of these words conjure up images of a medical emergency. They tell us that a problem is situated with us and that we need to be fixed.

We then also have to consider the militaristic language that surrounds medicine. “Chronic illness warrior” and “lost their battle to cancer” immediately spring to mind. The effect that these co-occurring discourse (see what I did there?) have on our sense of Self is to enter us into a fight with our own experiences. Experience helps shape the Self meaning that the popular discourse around mental health is placing us into a war with our Self. It is no longer okay to be us.

The irony here is that constant fighting with our own sense of identity causes further psychological distress. Perhaps the reason that outcomes in psychiatry have not improved for over half a century is because their methods and discourse are actually escalating our distress.

Instead of asking “what’s wrong with me?” We need to shift discourse over to “what happened to me?”. It’s vital that psychological distress be placed in the context of one’s environment and experiences of the complex power dynamics within them. There is a word for systems that require us to fight ourselves into a more socially acceptable place; oppressive.

Current systems within mental health treatment are weapons of the oppressive cult of normal.

As we look to the future, we need to consider how we will emancipate ourselves from normativity of all kinds and what we will accept as freedom. Society has spent a long time pathologising those identities and experiences that do not serve its own goals, and the time has come to stand tall and proclaim aloud; who I am has value, I will not be placed at odds with myself.

David Gray-Hammond 1 Comments
Feb 13 2023
Mental health and the diagnostic process: A neurofuturist perspective

As I discussed in my recent article about co-occurring conditions, the diagnostic process in psychiatry is inherently flawed on the basis that we have failed to find any meaningful relationship between the so-called “symptoms” of psychiatric conditions, and physical biomarkers which can be measured. Despite this lack of physiological cause, we are still diagnosing people as mentally “ill”. Despite this model not improving outcomes for around half a century.

So now we are faced with the issue of how diagnosis is not just given, but also how it is given responsibly.

One of the biggest flaws of psychiatry is the circular logic that dominates the diagnostic process. A person is Schizophrenic because they have symptoms of Schizophrenia, and they have those symptoms because they are Schizophrenic. This logic does not allow for a nuanced understanding of why a person may experience this particular cluster of traits, it simply follows that A = B, which is because of A.

If this is the case, how does one escape from circular logic?

We have to look for causes for traits and “symptoms” outside of the realm of medicine. While I have often remarked that external factors are the only thing with a meaningful relationship to these experiences, medicine is yet to catch up. It seems reasonable to assume that traumatic experiences are the cause of psychiatric conditions and not a problem within the body. This has ramifications for the future of psychiatry.

If people are not “unwell”, psychiatry now has a moral duty to advocate for it’s patients. Psychiatry needs to evolve into a tool for social change, and cease to be a weapon wielded by normative society. Beyond this, psychiatry needs an understanding of the relationships between neurodivergence, trauma, and psychological distress. It is not enough for psychiatrists to bandage the wound, they need to remove the knife from the hand of society.

This requires us to radically rethink our entire perspective on normality and cultural normative standards. We can not just medicate people and expect them to assimilate into society. We need to help them understand their own unique space in the environment and how to embrace their journey through that space.

As I discuss in my book A Treatise on Chaos, identity is a shifting and ever changing value. We are, at our core, beings of chaos. Psychiatry needs to be a tool for supporting us in the more challenging parts of that chaos, and not serve as a ring-fence around the Self.

Psychiatry is not completely off the trail. Medication can serve as an important tool to support a person’s wellbeing, and can be very helpful for reducing the more troubling and distressing aspects of psychological distress. The most important thing is that we all put in the work to evolve psychiatry and mental health support into a means to challenge the oppressive systems that exist within our world.

It’s time to stop the navel-gazing, and build a better future.

David Gray-Hammond 0 Comments
Feb 12 2023
Autism and ADHD: The myth of co-occurring conditions

It’s a very poorly kept secret that many people who are given a diagnosis of autism also meet the criteria for a diagnosis of ADHD. One could be forgiven for assuming this means that people who meet the criteria for both (often termed AuDHD) have two co-occurring conditions. Unfortunately, nothing in life is simple, and the actual answer to this situation is far more complex.

Co-occurring disorders refer to two separate conditions that are occurring at the same time. For example, one might be both asthmatic and diabetic simultaneously. I have chosen this particular example because I want to explore the disconnect between physical health and psychiatric diagnoses.

Diagnosis is a two part system. Step one is research. Clusters of symptoms are matched up to biological signs (known as biomarkers). Where a meaningful relationship can be found between symptoms and biomarkers, you have a disorder. In psychiatry, however, it does not go this smoothly. We can identify clusters of symptoms, usually behaviour or thoughts and feelings that have been deemed troublesome or pathological by those with the privilege of not being oppressed. The problem comes when we try to find a meaningful link with biomarkers.

Despite decades of research, we are not any closer to finding a quantifiable difference in the human body. The research that does exist has been largely inconclusive.

So here’s where autism and ADHD come in. Many of us meet the criteria for both diagnoses. This is because diagnostic manuals specify lists of traits, and if you meet enough of them, you get diagnosed. The problem is that much like pseudoscientific personality tests, humans don’t fit neatly into categories. The criteria for many diagnoses overlap and mic together.

The point I’m trying to make is that AuDHD’ers do not have two conditions simultaneously. In fact, according to the neurodivesity paradigm, there is nothing medically quantifiable. Humans have individual sets of traits that are diverse and interlinked. Remember the saying “if you’ve met one Autistic person, you’ve met one Autistic person”?

That’s because autism doesn’t actually exist. It’s not a physical abnormality, it has no presence. Autistic people exist, and being Autistic is an identity based on shared culture and language. So, what is far more likely is that Autistic and ADHD people are more likely to share particular clusters of traits. You don’t have two conditions, your particular flavour of diversity just happens to tick the right boxes for both.

One could argue that this means a separate diagnosis should be created for people who meet both criteria or that classification should be changed to have them listed as part of a shared spectrum. The problem is that current diagnostic models are unreliable and prone to mistakes. We often find our diagnosis changing from doctor to doctor.

This isn’t necessarily because doctors are bad at their job. It’s because we are trying to pathologise human experience and identity. You can’t measure psychiatric conditions with a blood test, doctors know this, and they’ve been trying to do it for many years. This means that not just diagnosis, but the criteria themselves are at the whim of individuals. Experts and professionals bring their own individual biases to the table, and each one will interpret traits differently.

This is why it’s important that we move towards a demedicalised approach to neurodiversity. We need to stop assigning people fixed identities through diagnosis and instead explore the very real fact that everything about us, including our neurology, changes with time.

People should be allowed to explore their identity and try on whatever labels they feel are right for them.

If this has intrigued you I highly recommend the Neuroqueer series that I co-author with Katie Munday and the interview I recently has with Dr. Nick Walker for my podcast.

David Gray-Hammond 3 Comments
Jan 30 2023
What purpose does the concept of mental “illness” serve?

As a Schizophrenic person, I see many talk about me as being mentally “ill” and in need of medicine. I do take medication, but for me, medication usage is similar to what one might see within ADHD communities. Medicine is a tool, not a treatment. It allows me to function in environments that are not designed to be accessible to me or my needs. It allows me to live my life without the constant experience of distress, one that I experience without medication because the world is not designed for me.

All suffering is valid, and all neurodivergence can result in suffering. Not because we are ill, but because the world is a traumatic place to live. Neurodivergent people have to face the oppression of all that is different on a daily basis.

“Illness” as a concept within psychological wellbeing a distress is a convenience. It allows professionals to tell us our suffering is unavoidable. If we die by suicide, then we are collateral damage. Victims of a pathology ravaging human kind. If we are “ill” then professionals and leaders do not have to acknowledge their role in a system, causing us distress.

This is what we are actually experiencing. Distress. When we can move forward from pathology models and start to consider that what is happening is a very human experience, we can start to point the blame where it belongs. A world that is violent and terrifying for a huge portion of the population. It is not on us to recover from a mysterious, unquantifiable entity of illness. The world needs to change.

We need to recognise that distress is a human experience, and no two humans have the same experience. Just because my distress looks like the loss of our shared reality does not mean that I am ill. Just because I take medicine that eases my distress does not mean I have a disorder. We don’t assume ADHD’ers to be ill for taking medication. Why do we do it to other forms of medication-assisted neurodivergence?

This ties us up in ideas around med-shaming and toxic positivity. One of the reasons people feel shamed of their meds is because, to them, it feels like an admission of guilt. They weren’t strong enough to survive without becoming ill. It’s not fair to let people feel that way. It’s also unfair to go the other direction and tell people to manage their distress without tools such as medicine. It’s possible to be neurodivergent (and not ill) and still need medication for day to day life.

Neurodivergence is aggressively neutral. It has positives and negatives, and it also has experiences that are not able to be compartmentalised. Truthfully, neurodivergent experience is human experience. The fact that we have to section off different experiences and diagnose them as “illness” or “disorder” fundamentally undermines the neurodiversity paradigm.

Mental “illness” is a deeply flawed concept, and until we fix this, we will not be able to reduce human distress.

David Gray-Hammond 1 Comments
Jan 26 2023
Understanding Autistic mental health in a broader context

We often discuss anxiety and depression amongst the Autistic population. Some such as myself and Autistic and Living the Dream have pushed to get lesser discussed mental health concerns into the zeitgeist, but there is a problem with how it is framed in a more general sense. When most people discuss Autistic mental health, they discuss the individual experiences, I feel it is necessary to look at the bigger picture.

One of the reasons we centre our conversations on individual experiences is because of the medicalisation of acquired neurodivergence. Medical models of psychological wellbeing centre the experience of distress as the defining feature of what is then described as a disordered mind. It teaches is that acquired neurodivergence is the source of our suffering, placing the responsibility on us to adapt to an unchanging environment.

This is where Autistic mental health becomes complicated. In general, Autistic people favour social models of disability and neurodiversity-affirming approaches, and yet we are taught that further neurodivergence is a disorder. It directly conflicts with our understanding of our Self. It partitions off parts of ourselves and teaches us to eliminate them rather than co-exist. What we actually need is to recognise that distress from traditional “Psychiatric conditions” is as much of a reaction to our environment as an Autistic meltdown is.

The environments that exist in our world are inherently traumatic for Autistic people. Trauma alters the way the brain functions, and we are then taught it is our responsibility to recover from that. In truth, the responsibility lies with the environmental factors that cause our distress. You are not suffering because of “illness”. You are suffering because the world is not made with your needs considered. When the world consistently abuses us, crosses our boundaries, and fails to meet our needs, we suffer.

Autistic people need to be allowed to co-exist with themselves. We need a world where the experience of distress doesn’t require us to get better but requires the world to do better. Lack of accessibility and invalidation of people’s lived experiences might well be one of the biggest causes of psychological distress in our society.

David Gray-Hammond 0 Comments
Jul 28 2022
Neuroqueer: Depathologising psychiatric “conditions”

This article was co-authored by David Gray-Hammond and Katie Munday

Trigger Warning: Ableism, pathology paradigm, sanism, use of words insane and madness, medication, therapy and trauma.

Neuroqueer theory evolved out of the neurodiversity paradigm. It was a logical progression in the field of depathologising natural variations in the human bodymind. This concept appreciates the neutrality of neurodivergence, as neither good or bad, it simply is.

While this concept has been widely explored in the area of intrinsic neurodivergence, (such as autism and ADHD), there is less discussion regarding acquired neurodivergence; neurodivergence that is typically acquired through trauma or the intentional alteration of ones bodymind (such as through the use of psychedelic drugs). Specifically, we wish to discuss the concept of psychiatric “conditions”.

Psychiatry itself is one of the youngest branches of medicine, first mentioned by name in the late 19th century. Due to its infancy the field still remains fallible, and is largely governed by the contents of a single textbook; the Diagnostic and Statistical Manual of Mental Disorders (DSM) currently on its fifth edition, and the recipient of a recent text-revision (DSM V-TR). Unsurprisingly, this textbook is based entirely in the pathology paradigm, with all bodyminds described in its pages as “disorders”.

The use of the word “disorder” is important. This word places a level of responsibility on the individual to return to a more “ordered” state, dictated by cultural norms. This has historically been achieved through the use of psychoactive drugs, which are often prescribed before the use of talking therapies.

Psychiatry has a place in the world, but currently relies too heavily on the use of medication, without understanding the context around individuals. This is why it is important for psychiatrists to take a more trauma-informed, neurodiversity-affirming approach. There is a balance to be found between the use of medication, and the introduction of talking therapies that encourage the individual to co-exist with the traits of their neurodivergence.

It is important to understand and work with people holistically to reduce their distress, as many of us are seeking support due to ongoing trauma.

We are living in a world that overwhelms our senses, ignores our social communication differences, and treats us as second class citizens. Autistic people are made to adapt to norms that are both uncomfortable and harmful, and this creates complex-trauma for an increasing number of us. Once we experience bullying, isolation, and neglect, our self-worth takes a nose-dive. Often we mask our Autistic differences for fear of ridicule, perpetuating the low self-esteem that arises from forced conformity and assimilation. This becomes a cycle of shame that encourages us to hide our true selves, in return for a semblance of dignity.

So where does neuroqueer theory fit into this?

Cultural expectations of mental health are based heavily in sanist ideas of “normal”, and define our understanding of “madness” as anything that departs from these expectations.

Taking a neuroqueer approach allows us to embrace our differences, whilst appreciating that many of us still need accommodations. This is why emerging talking therapies that teach co-existence (rather than interventions that aim to change us) are an important step forward.

Subverting the expectations of our societies predominant culture, we reclaim ourselves, and learn to co-exist with our “psychiatric” self. No longer are we “insane” by normative standards, but neurologically queer, and refusing to be ashamed of that.

David Gray-Hammond 3 Comments
Jun 8 2022
Coping with psychiatric medication when Autistic

For many of us, medication is a necessary part of life. For a huge portion of the Autistic population, that medication is prescribed by a psychiatrist.

Psychiatric medication can be a troublesome topic, psychiatry itself is a relatively young discipline, and can often be found to be neuronormative in nature. It relies on the idea that the human mind can become ill and require medicine to fix it, and yet no test can definitively prove the presence of this illness in the body. It seems logically absurd, and yet, mental health issues can cause immense suffering.

One of the most stressful parts of taking these kinds of medications is finding the right one. Each person brings a different neurology to the table, so when using psychiatric medications, which by their nature act on the brain, it is important to remember that there is no “one size fits all” approach. Each person will have a different experience with medication, and this issue is compounded when you consider the Autistic population, for whom little to know research is done on the efficacy and safety of medications.

This moves us neatly onto my next point, which is side effects. Autistic people often experience rare or paradoxical reactions to medications in my experience. A recent medication change for me actually turned the skin on my hands blue! This is why I always ask my psychiatrist to take the harm reduction approach of start low, go slow. In other words, start with the lowest reasonable dose, and very slowly titrate the dose up. I find that for me, this has helped me avoid many of the less tolerable side effects, and better tolerate the ones that I do get.

An interesting point raised by twitter user @lilririah is access to food. Many of these medications rely on the idea that people can eat regular, healthy meals. Something that prescribers should consider is that the world over is experiencing a huge rise in the cost of living which is having a huge impact on the disabled community at large. Telling someone they have to eat when they take their medicine can essentially be the same as telling people that they can not take the medicine. When the world is trying to decide between heating or eating, a life or death decision over important medications is not going to help their anxiety.

Once you have overcome all of this, there is the issue of maintaining the treatment. Medication comes with a lot of stigma that many of us internalise, and some people simply do not want the medication in the first place. While personal choice is important, and should come from an informed position, prescribers need to do more to help people maintain a healthy relationship with their medication. When you consider the Autistic and ADHD bodymind, it is easy to see how remembering to take a set dose at the same time every day could become problematic.

Assuming all of this isn’t an issue, there is one more problem I want to discuss. Sometimes medication just stops working. Sometimes we can be stable for years, and out of the blue, we fall apart. It is the unfortunate truth of psychiatric medication. This is why we have to be willing to go over this battle time and time again to stay balanced. I personally struggle with this part. I often wish for a magic pill that would make my psychosis go away forever, unfortunately, that does not exist. Besides, mental health is part of who we are, good or bad, it plays a role in our experience of the world.

Whether your mental health is in a good or bad place, we all have something to give to the world, we are all important in our own way. It’s easy to lose sight of that when you have grown up Autistic, constantly being invalidated and told that everything about you is wrong. I want to assure you that the world is better for having you in it, and the battle is worth it.

Stay strong.

David Gray-Hammond 1 Comments
Apr 16 2022
Guide to starting new psychiatric medication for Autistic people

This article is not intended as medical advice, please speak to your prescriber for any medical questions pertaining to medication. This article is something of a survival guide based on my own experiences, other’s experiences may differ.

Recently I started a new medication on the advice of my psychiatrist. This is the event that has acted as somewhat of a catalyst for this article.

As Autistic people, we often find ourselves taking psychiatric medication for a plethora of reasons. However, our experience of these medications is (anecdotally) often vastly different to that of our non-Autistic peers.

This bring me to my first point. Many Autistic people report having rare or paradoxical reactions to medications. Paradoxical reactions usually involve the effect or side effect being the polar opposite of that which is expected. Commonly this is seen in ADHDers with stimulants, and is in fact what underpins their use in the support of those of that particular neurotype.

However, trying to get your doctor/prescriber to understand your paradoxical reaction when it is unexpected can be very difficult. You have to be prepared to advocate for yourself. If a side effect is intolerable, do not be afraid to speak to your medic.

Something else to consider is that many of us report being very sensitive to medications, especially during the initial titration period. I personally always ask my doctors to stick to the rule “start low and go slow”. I find it helps to avoid intolerable side effects during the titration period, and allows me to better evaluate when a medication is working, and what the minimum dose I need to see a result is.

Don’t be afraid to learn about medications, but before to include your prescriber in your learning. They are the expert on medications. That said, you are the expert on yourself, so always be prepared to advocate for yourself. When starting a new medication, I tend to familiarise myself with the most common side effects, and any warning signs that I am having a dangerous reaction to the medication. After that point I will only consult the side effects leaflet if something unexpected happens. I find that this helps reduce anxiety around medication changes.

You don’t want to spend the first two weeks of titration constantly assessing yourself for every side effect, it’s exhausting.

This bring me onto my final point, starting new medications can be taxing on your spoons. Try to start medications when you have the opportunity to do nice things for yourself. Look for opportunities to rest and recuperate those spoons that you have expended. This won’t be feasible for everyone, but please do your best.

As I mentioned at the beginning, this is based on my own experiences. Yours may differ, and if you have an insight that you feel I have missed, please do feel free to drop it in the comments. We all learn from each other.

Finally, remember; sometimes medication is necessary. It’s okay to need this accomodation, and the only two people whose opinions should matter in this debate are primarily your own, but also your prescriber.

Do not allow space for the med-shamers.

David Gray-Hammond 1 Comments
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